The Following User Says Thank You to ECM1981 For This Useful Post:

@PreciousHeart thank you so much for the info on PDG...I cant even imagine how you have gotten through this many rounds - big hugs and kudos to you XX

So, you put them back in Day 3 - was that something the clinic usually offered or you asked/pushed for it? My FS (Devora) seems adamant on Day 5 ugh..

We haven't found out DQ/HLA matches - do you think we should be doing that before next cycle (have had two stim cycles BFNs, no frosties)?

With Adenomyosis -how do you know you have it ? Can it be silent like endo? Did Dr M do the investigation/op? And did you have all the drugs prior to transfer - so you were on the Zolodex for three months to calm the Adenomyosis then LIT and all the other drugs just before transfer?

Thank you

Hi Ange1111 – with my son who is now 4, I had blocked tubes so had to do IVF. I also had high FSH and only ever got 1 to 3 eggs. I now know I have way more issues than that!

My FS then was Mark Livingstone at Genea Kent St. He did one fresh at day 5 – BFN. Then an FET – miscarriage at 7 weeks. Then I only got one egg and he transferred it at day 3 as it fertilised normally. Again miscarriage at 7 weeks. Was devastating.

The next cycle (#3) I got 3 eggs, 2 fertilised and he put both in of his own accord, I didn’t ask and I’m so glad he did. His idea was that I was unlikely to have twins to full term based on my history at the time.

Devora should do the same for you. I would ask her about it. Mark always read me the riot act about the risks of twins to both mother and bubs which always terrified me!

If you are getting enough fertilised embryos to go to day 5 then that is why Devora is doing that - day 5 as you know is more viable…. Mark’s opinion with only a couple was better in than out in a petri dish. I wouldn’t switch to him though as he stonewalls anything to do with immune system except clexane and steroids - only if he really has to. He also ignored my adenomyosis on scans over 2 years when trying for our second bub. Very disappointing.

How many mature eggs are you getting at collection? How old are you? I was 38 with my misses then 39 when I fell with my son, I turned 40 at 2 months pregnant. How amazing is that, so lucky. I took HEAPS of bioceuticals coq10 and loads of other supps etc, forced so much stuff down my hubby’s throat too

If you are looking at getting more tests done, I wish I had had the DQ/HLA match test done 3 years ago. It’s expensive to do but well worth the money to find out. Cause if you need LIT, you need it, it’s that simple. If you need it and don’t know, then you are wasting your time and money. Having said that we did somehow have our own miracle genetic child at the beginning of IVF but after that it got worse, NK cells went mental with each failed transfer etc.

My other issue unrelated to immune stuff I believe was adenomyosis. Sootymay on this thread told me to look into it and that she had had success with zoladex and a whole cocktail of immune stuff. So I did. I fired Mark and got my GP to write a referral for an MRI ($500) and sent the results to Prof Tremellen at Repromed in Adelaide and had a $100 phone consult with him at which he told me I had a severe case. He wrote a letter for any FS I wanted with a protocol etc which the FS agreed was right.

I saw Alison Gee (amazing woman) but went with Nick Lolatgis in Melbourne due to donor reasons. Also IVIG with Nick is way cheaper than Dr M! I had to have IVIG 3 times. And do PGD. But ALLLL worth it. It worked! I had 4 donor egg blasties fail with ML in 2014 because I did not have matches diagnosed (why Dr M never did this I have NO idea) and adenomyosis was being untreated. For those 4 blasties I did IVIG, neupogen, steroids,clexane – had one chemical, the rest BFN although all but one showed a line on FRER.

The only way to diagnose adenomyosis accurately is biopsy or MRI (no rebate on this). When I asked PRof Temellen which was better, what did he want me to do, he said MRI. I would have done whatever he recommended, he is the expert on this I am told, a firm believer in it whereas other FS dismiss it!!!!

I did zoladex for 3 months prior to FET, did LIT before FET (twice per protocol), started neupogen, dex, clexane, progesterone, etc per Dr M before FET too. Had to have a booster LIT at around 9/10 weeks per Dr M surface markers, am now on intralipids hopefully only one more. I’m nearly 17 weeks. Weaning off prednisone and still on clexane until 32 weeks or so per Dr M. I live in Sydney by the way!

Good luck, it’s so hard to work out your own puzzle, just make sure you have a FS who wants to do that, ML seemed to have no interest and I had to work it all out myself to the tune of tens of thousands of dollars, heartache and wasted time.

Good luck!!!! xx

The Following User Says Thank You to PreciousHeart For This Useful Post:

@PreciousHeart I am hearing you with the ML stonewalling of immune issues....he actually made me feel quite silly for thinking that could be my problem...anyway DH and I talked about it and then went to Dr M anyway and didn't tell ML that we were using Dr M's protocol! ML is good, but I think I must credit Dr M for keeping my precious bundles kicking along! 25 weeks tomorrow- still doesn't seem real and I'm still expecting something to go wrong.....no more intralipids, have stopped prog pessaries, nearly weaned off pred and need to stay on clexane until at least 28 wks when I do another surface marker BT to see where I'm at......kind of weird getting rid of all those things that feel a bit like a security blanket!

PS Wondering if anyone has had any luck getting their first consult invoice re sent to them with the claim number on it from medicare? I have tried twice now and nothing has come through from Dr M's rooms....

Also wondering for any remote NSW peeps have you ever tried to claim from the IPTAAS scheme for trips etc to Sydney to see Dr M? I have just done it for my IVF stuff, and won't get a heap back but it is available for specialist visits, so wondering if Dr M has ever done it?

TIA and hope all are well xo

The Following 2 Users Say Thank You to Ruby16 For This Useful Post:

Ruby16 how great you are 25 weeks!!! Funny you have similar story re ML, I wish I'd switched to alison gee years ago as she is open to it all! You should try IPTAAS but check out the guidelines first, you might have to have a disability as it's run by enable nsw where I worked for 3 mths recently. Not sure but give the IPTAAS number a call. Good luck!

Ruby16 how great you are 25 weeks!!! Funny you have similar story re ML, I wish I'd switched to alison gee years ago as she is open to it all! You should try IPTAAS but check out the guidelines first, you might have to have a disability as it's run by enable nsw where I worked for 3 mths recently. Not sure but give the IPTAAS number a call. Good luck!

Thanks @PreciousHeart! Yep it's interesting how some FS's are just so stuck in their ways!

Also, don't think you have to have a disability as my rural Genea clinic gave me all the paperwork to send in to claim for my travel to and from Sydney for my cycles last year- have submitted that paperwork (and it didn't refer to or ask anything on the paperwork about disability), so will let you know how I go!

What is the best timing for intralipids ladies? Seems to be a bit vague, think Genevieve said something like 'anytime' prior to transfer... Does anyone know best time? And why would some do two lots of intralipids - is there a benefit do you think? And does anyone know if you do get a BFP when intralipids are next given (if at all?)
Thanks

Hi ange1111 re intralipid anytime before transfer is not right at all... If you google dr sher & dr Braverman you will see... I had IVIG on 7 Jan & transfer on 14 Jan... 7 to 10 days prior is optimal as IVIG & lipids need that long to take action in the uterus... That comment from his rooms makes me cross. After BFP I had it 3 weeks later & then every 4 weeks, switched to intralipid after 3 ivigs.

The Following 2 Users Say Thank You to PreciousHeart For This Useful Post:

Hi All
My husband and I have just found out yesterday I have a "moderate" amount of natural killer cells, I am feeling overwhelmed and confused.

My husband and I have been trying for 3 years and we started getting the help we need over a year ago which we had x2 failed IUI's and x1 Failed IVF, The doctor kept saying I have PCOS but cause I'm young it will eventually work. He had no interest in doing a laparoscopy and said we will look into that after more failed cycles. I had enough and went to another highly recommend gyno who straight away booked me in for a Lap.
I have now found out I don't even have PCOS and I have NKC. He wants to put me on steroids and blood thinners? Would love some stories/information ect. Put my mind at ease

The Following User Says Thank You to babypanda For This Useful Post:

Hi All
My husband and I have just found out yesterday I have a "moderate" amount of natural killer cells, I am feeling overwhelmed and confused.

My husband and I have been trying for 3 years and we started getting the help we need over a year ago which we had x2 failed IUI's and x1 Failed IVF, The doctor kept saying I have PCOS but cause I'm young it will eventually work. He had no interest in doing a laparoscopy and said we will look into that after more failed cycles. I had enough and went to another highly recommend gyno who straight away booked me in for a Lap.
I have now found out I don't even have PCOS and I have NKC. He wants to put me on steroids and blood thinners? Would love some stories/information ect. Put my mind at ease

@Angel1111 I am Melbourne, doesn't look like he is in Melbourne Have you started the meds for NKC ? Do you know any side effects? Im worried I will put weight on with the steroids I have worked so hard to get 10kg off and still long way to go to be in "healthy weight range".
@Velvet16 thanks I will have a read

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